I’ll be responding with a few comments. I apologize if I’m all over the place. Insomnia and brain fog.
Thank you for your response. I wanted to add that one of the biggest issues with FND is despite the “positive” signs they consider to be rule-ins, this entire category of psychosomatic medicine depends on pro-innovation bias (excessive optimism toward medical technology’s current capacity to answer all of the relevant questions).
I’m not sure if you’ve heard of it but there’s a field called “functional neurology” or “chiropractic neurology” that works outside of conventional medicine and some of them are very advanced in the courses they have to take as well as the evaluations they do. They take extra courses in neurology based on established and growing/newer science. It’s interesting how their approach to the brain/sensory integration does not consider “functional” to mean “psychiatric.” Dr. Nathan Keiser is a FN I follow on social media who has some great videos you may be interested in. Another mention is MSK Neurology’s page, while although anti-chiropractic, discusses relevant biomechanics that cause a wide range of symptoms—it is very in depth, technical, and relevant to this field because I think what he’s shown would potentially demolish many so called FND patients (which are likely causing a loss of data through this diagnosis).
Moreover, a lot of radiological reports miss certain things, which the author has seen repeatedly. The evaluations by many doctors don’t always include everything of relevance in the physical examination (also detailed on his website and videos) or consideration of what the symptoms signify. For instance, it was thought intracranial hypertension without papilledema was rare; this is based on the assumption it must present in a more extreme way clinically when that is not always the case.
In CFS they’re finding the ICP is on the higher end but not “high enough” by the usual diagnosis of IIH, yet still present with symptom overlap and they’re looking into successful treatments for this (Higgins et. al, 2023). The author of MSK neurology is also finding many patients with IIHWOP/craniovascular issues in the case of many vestibular/neuro problems. He’s outlined the complex anatomical connections between it, tinnitus, tics, autonomic conditionsc etc. I’ll link to his page so you can see it. It’s outstanding.
Although I don’t understand it all (medical terminology) I see how important it is because the ENTIRE conventional field of functional neurology seems to lack even one expert on biomechanics who has enough experience to ask all these pertinent questions. I myself have some IIHWOP symptoms and have for many years. I have MdDS and just found out a major MdDS researcher is finding vascular compression in the neck of patients ONLY if actually looked for through CT venogram and doppler ultrasound in two different positions. They’re also finding TOS in these patients and higher ICP. This is evolving and in the research phase but it’s interesting I had already suspected this was a common issue after several years of emailing a retired doctor who is also a researcher that has IIHWOP (so do her children). It’s likely way more common than thought but unfortunately medicine will stay behind until the research is fully developed. I also have a smaller cerebellar tonsillar herniation, which radiologists initially missed. I fortunately got a scientist friend to do a favor (years ago) by helping me get a second opinion and a radiological expert saw the herniation and gave me the image with the measurement. I’ve got the image proof. He didn’t understand why they failed to measure or report it but at the same time it’s not uncommon for radiologists to miss certain things and count it as “unremarkable”. This type of imaging also doesn’t count the effects of gravity due to being supine. This too can potentially be a secondary issue related to raised ICP. I wanted to get the vascular neck imaging relevant to MdDS/my symptoms but it would be a fortune out of network because insurance limits rare disorder patients such as myself. Getting a spinal tap would also be risky, as it has been reported in some cases to pull a herniation further down. Still, there are signs and clues that hint to potential ICP problems.
Then there is the issue in sleep medicine of UARS. I had sleep apnea as a child and got surgery. I still however have chronic insomnia. I got a sleep study and they told me "Well, no sleep apnea” and wanted to give me medicine for restless legs that I get on occasion, when this is not my main issue. I have insomnia with or without RLS. I sent the full report to a retired doctor/sleep medicine researcher I know (who also takes interest in biomechanical problems in certain patient-populations). She immediately saw red flags: too many arousals per hour and double of it being in REM, which signals respiratory related arousals (these can occur before airway collapse, thus not causing total apnea). I also had 54% sleep efficiency and that was on a good night (subjectively). She has seen many people reported normal at some labs then other labs find the abnormalities. I am sorry to go into too much but I want anyone reading this to be aware of the shortfalls of conventional medicine and why the FND diagnosis could be slapped on people who have conditions being missed. I am beyond, and I mean beyond, frustrated.
Here are the important links I implore anyone to read:
https://mskneurology.com/myalgic-encephalomyelitis-me-biomechanical/
https://mskneurology.com/atlas-joint-instability-causes-consequences-solutions/
The opinions expressed in my comments are my own and anyone interested in the author of MSK Neurology’s page can find his direct statements/commentary on his FB and website.